My DH was finally dx with MS after his first "exacerbation" in 2007. One minute he was apparently healthy, teaching full-time, going to school part-time, coaching softball, holding a part in the school musical, and that all came crashing down, literally, when he collapsed in his classroom and woke up dizzy and unable to walk steadily enough to do so unassisted. He was in a wheelchair for 2 months and on a cane for another month before he could walk unassisted, and slowly "got better" having never known what was wrong - it was 2 more years before MS was even brought up, and every year it happened again, his exacerbations now beginning in the winter every year like clockwork. While many see the diagnosis as a nightmare, after 7 years, finally HAVING a diagnosis was a lifesaver.
For one thing, it means FINALLY getting treatment. His neurologist chose Avonex, (specifically, the pen, after the first month's titration) and fortunately, the side effects have mostly been mild. It has been 6 months. Right around now would be the time the symptoms would be slowly starting to creep in - the ever increasing dizziness, the tremors, numbness, the laundry list is dizzying in and of itself. . . but - they AREN'T!
It's a little early to celebrate, however. About 2 weeks ago, it became evident that OTHER symptoms had begun to rear their ugly head - symptoms I had long forgotten about - the neuropsychological symptoms. Yes, when his physical symptoms are at their worst, he has some of these - trouble concentrating, depression, irritability - but they are secondary. These are MUCH different.
These are symptoms he had the first time (and I could be remembering wrong - it was a LONG time ago and it was a traumatic time) but I believe some of these symptoms were occurring BEFORE the collapse. I can't be certain. Anyway - the symptoms I refer to include:
At first I assumed it was the MS - then I happened to pick up the Avonex insert and remembered the warning label...so, we call the neurologist.
- Severe Depression
- Confusion/Cognitive Difficulties
- Irritability/Irrational Behavior
- Inappropriate Behavior/Lack of "Propriety Filter"
- Anxiety/Loss of Appetite
At first I assumed it was the MS - then I happened to pick up the Avonex insert and remembered the warning label...so, we call the neurologist.
I was hoping he would get us in right away, maybe give us a referral to a specialist that could TREAT the psychological symptoms he was having...but no - he was told to stop taking the Avonex, and he would see him on Dec. 3rd - by then the meds should be out of his system...Now, I see that there is logic in this idea - it will determine IF the symptoms are related to the medication or the MS. Then we'll know. However. . .
In the MEANTIME, he is just this side of suicidal, which means I am just this side of suicidal, he is crying 80% of the time, which means I'm crying 60% of the time, and this is supposed to go on for three more weeks. Additionally, what if it is NOT the Avonex and it IS the MS? Then, he will have gone 3 weeks without meds (from the time of the call) and may be physically symptomatic, as I have begun to wonder if THESE symptoms are so pronounced because his physical symptoms have been suppressed by the Avonex.
Both my husband and I suffered from depression in our youth - this is way beyond that, more acute than either of us have ever seen and neither of us knows how to manage it at this point...Has anyone else experienced anything like this on Avonex? Just with MS period? Have you found a good treatment option?
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